HEIDI. FAP. DIAGNOSED AT 13. NEW YORK.

Hi my name is Heidi and I have Familial Adenamatous Polyposis (F.A.P.). At thirteen years old I had genetic testing done to see if I tested positive for the F.A.P. gene. The reason why I was tested and especially at 13 was that my mom was diagnosed with F.A.P. at 19 and was told at the time of my birth around 13… It was a simple blood test.

Because the blood test came back positive I had to have a colonoscopy to see where the disease progression was. So soon after I had my first colonoscopy which confirmed a carpeting of pre-cancerous polyps lining my colon. At age 14 my mom, grandma and grandpa took me for 2 consultations at Mount Sinai Hospital in New York City. They were thinking to do my colectomy at age 14 and laparoscopically, but the catch was that because I was 140 pounds that I would need to lose 25 pounds. At 14 this was not optimal. My grandma was talking to a lady who attended our temple and she said her daughter in law who had Crohn’s or ulcerative colitis was initially seen at the Cleveland Clinic, but now she was being seen in NY by a doctor that was trained at the Cleveland Clinic. I had a consultation with this doctor and he agreed to do the surgery but now it was going to be done open with a j-pouch and temporary ileostomy. I never had any symptoms prior to my genetic testing or colectomy.

When I found out that I was going to need surgery I totally flipped out. To learn at 14/15 years old that I was going to have my colon removed and have an ileostomy. When my mom had her first surgery I wasn’t born yet and when she had the other surgeries prior to my first surgery I was sheltered from it and didn’t know or I guess understand what was going on. I was in eighth grade in 1999 when my mom had her Whipple procedure and didn’t know how severe of a surgery that was.

So at 15 years old I had my total colectomy with j-pouch and temporary ileostomy. The day was Tuesday July 17, 2001. I was in the hospital for seven days and when I got home initially I was OK until three days later were I started vomiting uncontrollably and had my first real emergency room visit. I had to be readmitted to the hospital because apparently I had a high ileostomy and was at risk for dehydration. To have an ileostomy to begin with is comparison to a colostomy you are at risk for dehydration due to high liquidy output. I was hospitalized for another seven days to get my body back in working order.

In three months from my initial surgery I was cleared to have my ileostomy reversed and my j-pouch in working order. I had this wonderful, yes wonderful surgery on October 30, 2001, my sweet sixteen, the best birthday present I could ever gotten. I was in the hospital for seven days. I was not allowed to eat or drink until my bowels woke up which was five days. This hospitalization was thankfully uneventful. On day five everything woke up and was able to drink and day six I ate and day seven I went home.

August 2002 I had a small bowel obstruction where my small bowel was not working properly. They had to insert a NG (NasoGastric) tube to suction out my stomach. This was a feat in itself because I was 16 years old and was still a pediatric patent and they tried the pediatric tubes first, but I kept throwing them up. When they got me to the pediatric floor they started using the adult tubes and on the fourth try they got the tube in. I was so hysterical that my mom got the nurse (who stood by my while the surgery team was getting the tube in) to get me valium which helped calm me down so much. They were successfully able to clear my small bowel obstruction with and NG tube that stayed in for five days and it did not required any surgery (this time).

I have had numerous hospitalizations since then including some more abdominal surgeries. I had half of my stomach removed due to pre-cancerous polyps in 2012 and need a hernia repair that same year because when your abdomen is open up so many times it weakens you abdominal wall so they “implant” mesh to keep everything in place. The other hospitalizations have happened do to chronic abdominal pain which is under control now, but unfortunately after you have had so many surgeries it could come back. I yearly get pouchoscopy (colonoscopy for those of us with j-pouches) and I yearly get upper endoscopies as well.

I have a fantastic support system that goes above and beyond to get our problems solved.

Thank you Jolane! Your son is an awesome man! Putting a face to this horrible disease it good especially to help those that have never met another FAPer outside their family. I do not know what we would do without Facebook. In 2 weeks I will be meeting 3 FAPers that are not related, I happen to be in the area where they are and like I said they have not met people outside their families that have this “fantastic” disease (sarcastic obviously) but I do believe that we are not given what we cannot handle and it is crazy to see how young kids are being diagnosed these days. We all do not know what the future holds with this disease but it is great to see first that med students actually know what the disease is when you tell them unlike when I was first diagnosed 16 years ago and that medicine is advancing and some major surgeries are able to be done as procedures.

Hey Heidi,
Just read your story huni.
Hope you doing well at this momebt!!.

How nice that you are going to meet 2 or 3 fap sisters or fap brothers!! I haven’t met in real life with a fapper… But going if everything is fine, this year to England to meet a woman who has fap..
In thiscommunity, destination x ride, is only for people from America or Just for people whole over the world?? And Yes I am also so glad that we have facebook, otherwise I never ever had net you….
Lots of love and hugs
Petra xxx